We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.
Our services
Telephone Support
Our telephone support line is open 10am - 4pm, Monday to Friday
Email Support
You can reach us via email at any time, and we aim to respond as quickly as possible
Events & Annual Forum
We organise multiple events around the country
CaverBuddies
On going peer support when you need it most
Professional Lectures
Presentation and research events around the country
Meet Ups
Join us, and members from your local area for a coffee & chat
Therapy
Therapy for adults, children and carers to work though concerns
Webinars
Online meetings, presentations & chats providing information & advice
Carers Support
Support, chat and advice for carers of those with cavernoma
What our members say...
A world without CAUK doesn’t bear thinking about!
Get in touch with us
The AstraZeneca Vaccine and Cavernoma
In the light of developments concerning the safety of the AstraZeneca vaccine we asked our scientific advisor, Professor Rustam Al-Shahi Salman, for advice for people with cavernoma.
Easter Riddles for Egg Hunt
With the easter bank holiday ahead of us, please find below a simple set of Riddles to make your Easter Egg hunts much more fun
CAUK Members Survey 2021 Results
We are delighted to be sharing the results from our recent member survey. We are continually working to improve the information and resources we provide so we are extremely grateful and pleased with the feedback we have received. This year has been challenging for everyone and we are so happy that we were able to offer much needed support for our members during this difficult time.
Hopeful Acts: Planting Seeds for the Future
Looking back to this time last year, we were all at the beginning of our lockdown journeys. Suddenly, things we took for granted could no longer happen and we had to adapt to new ways of being. Our latest therapy blog post by Fiona Holiday.
Fiona Holiday – The Elephant and The Thinking Brain – Emotions, Experiences and Well-Being (March 16 2021)
What we think, how we feel and how we relate to other are driven by the way our brains, bodies and minds work together. During this session, CAUK therapist Fiona will explor ehow our brains and bodies search for safety and respond to danger. We’ll talk about emotions and stress and what happens when we feel overwhelmed by danger and experience trauma.
Ian Kamaly-Asl – The Implications of Screening for Cavernous Malformations and Risk with Activities for Patients with Cavernous Malformations
Doctor Ian Kamaly discusses what options there are for screening of both patients with known cavernous malformations and family members who may possibly be affected. He then went on to give a very useful discussion on participation in sport and other activities for patients with known cavernous malformations.
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for